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Everything posted by JANQ

Hi Sherry!
I really love Amandaâ€™s approach to dealing with the doctor. While firing your doctor, also, remember that plain old looks can say it all. As a friend said to me, just give him the look that says, â€œIf we were in the Mojave Desert right now buddy, you wouldn't be getting a drink out of my canteen!â€
Hang in there. Even if this doctor doesnâ€™t understand, you will be able to find one that does!
Many hugs and best wishes,
Janet

Hi Jeannie:
Very good question.
I would have to agree with Margaret, because the lack of stamina and the debilitating fatigue affects all else in my life. It robs me of my quality time with my daughter, the ability to go anywhere, the ability to do anything outside of the home, the ability to take care of my home properly, the ability to take care of my gardens, the ability to cook decent meals, the ability to enjoy life, really.
If I could just do all of these things again... (deep sigh).
Many, many hugs to all.
Janet

Hello Everyone!
I am not sure which way to turn, I feel like I am upside-down, again! I initially got on treatment when I was diagnosed on December 19. At that time, the P.A. in my rheumatologist's office had me make two follow-up appointments, one for one month away with her, then one for a 3-month followup with the doctor. My 3-month followup was on Thursday. Due to unforeseen circumstances, I had to cancel. Long story, please don't ask! However, yesterday, I stopped into the office to reschedule. I was told by the P.A. that I specifically needed to see the doctor at this visit, after having the previous three visits with the P.A. Well...the receptionist informed me that the doctor is booked solid until mid-August! I exclaimed that it was for a follow-up, not an initial consult, and I could not believe it! She said she would go back and check with his assistant, to see whether or not they could see me any sooner. She talked to the assistant, and came back and said, "No, you will just have to schedule in August, but the assistant said if you need meds during that time to just call, or if you have any questions, just go on back and she will be happy to talk to you." I asked if there were any labs that I needed to have in the meantime, anything at all, and she told me to go ahead and go on back and ask the assistant. I went back to the office, as instructed, and explained to the receptionist in that area that I was unable to schedule an appointment until mid-August, but I had questions regarding labs and such for the assistant. She told me to wait, she would let her know that I needed to talk to her. I waited...20 minutes, as long as I possibly could, then had to leave to pick up my daughter for Noon dismissal at school. I told the receptionist I was unable to wait any longer, and she said that she would have the assistant call me. I waited for a call for the rest of the day, no call.
This isn't the first time that I have felt completely pushed aside at this office. I had called two previous times for copies of my labs, asked to have someone call me about getting them, and had no return calls, no responses. I also had my Nexium prescription rejected by my insurance company and the pharmacy faxed my doctor's office, and no responses on that issue, also.
A dear friend, who has scleroderma, knows the issues that I have been having there, and my concerns with the P.A., and goes to another doctor in the same office. This other doctor has seen her on every visit except for one, and on that visit still popped in while she was with the P.A. She said that he is compassionate, caring, very knowledgeable, and she has never felt brushed aside. She also said that she has gotten return calls every time she has called the office. Since she told me about him, I have heard numerous good reports about this doctor, people just love him. My friend really wanted me to see her doctor, so on her last visit she asked if they would take me. She was told that they don't do that (allow patients to switch doctors in the same office), and was told by her doctor, "I'm not going to break the rules."
Well...once again, I feel like I am stuck between a rock and a hard place. It is another up and down situation. (I feel like all I do is cry anymore.)
If I felt like I had stabilized, the wait would be okay. However, new and different issues have popped up since the last visit, and I am upset. I did explain this to the receptionist when trying to reschedule.
My 3-month followup will now be an 8-month followup.
I am not sure which way to turn. Should I call my internist? She was the one who referred me.
Any advice would be very appreciated.
Many hugs to everyone,
Janet

Hello everyone, this is just an update on recent events:
I never heard back from the medical assistant at my rheumatologistâ€™s office. This didnâ€™t surprise me, and even though it was just another disappointment, I had made up my mind to change rheumatologists and offices completely.
In the meantime, I have been doing research on the different rheumatologists in my area. I found several different websites with ratings. In all of the different websites, I found one doctor who seemed to stand out from the rest. The comments about this doctor say that he is kind, compassionate, caring, listens to all complaints without brushing them off, and is very knowledgeable and professional, among many other very positive comments. The ratings are excellent for both him and his office personnel. I decided that I wanted to see this doctor.
I waited for Spring Break to pass, since I assumed my internist would be out of the office last week. I called her office first thing yesterday morning, and left a message for my internist stating that I was wondering if she could refer me to Dr. X. This morning, I got a call from the new rheumatologistâ€™s office!! They said that they wanted to set up an appointment to see me after getting my internistâ€™s referral. This doctor will be able to see me on May 4! I am so thrilled! It wonâ€™t be a long wait until mid-August!
My internist has already sent the new doctor my labs and test results!
Thank you to all for the kindness you have shown, your suggestions and support! I never could have done it without you! I feel like there is hope and help now, instead of falling by the wayside.
May we all find the help that we need!
Much love to all,
Janet

I'm joining in on the hug for Susie, (((((hugggg!!))))). Hoping you can feel the warmth across the miles!
Wishing for great news today!!!
You will be in my thoughts, Susie.
Special warm wishes your way,
Janet

Hi Penny:
It is time for a big huge ((((Hug)))!!
The Penny that we all know and love here doesn't give up!! You have been one of the most uplifting, supportive members, and I think we won't allow you to be discouraged!! It is our turn to cheer for Penny!
This road is so up and down, and we all know that if you find a doctor who isn't listening, it is time to change. (Yes, I've learned!) Symptoms are not all in your head!!
I found a wonderful internist who ordered the tests that were strongly indicative of autoimmune. She had the Reflexive Antinuclear Antibody Profile run on me which indicated a positive ANA, and an elevated dsDNA Autoantibody of 23, anything greater than or equal to 10 is positive. Did your rheumatologist run this profile for you? Also, in my White Blood Cell Differential Count, my EOS (eosinophils) was 16.7, normal range 0-5. She told me these were high positives and along with my symptoms indicated Lupus or another autoimmune disease. I believe that you can ask for specific tests, if anybody knows differently, please correct me. Please try to find a doctor who will listen to you, run the tests that you need, but also remember that the tests can never diagnose alone, whether positive or negative, the doctors have to be listening to the one person who knows his or her symptoms and body the best.
Good for you, Penny, on taking the initiative to call an oncologist on your own!! And for having your lawyer work for you regarding your Worker's Comp. I am going to be sending big wishes your way that both of these issues work out on your behalf!!
Keep fighting, Penny! We are here for you!!
(((Warm and gentle hugs!!)))
Janet

Hi TOB:
First of all, I am so sorry for this experience with your rheumatologist! It is so frustrating to have a doctor NOT listen! We know our own bodies, and we need to have doctors, of all people listen to us, look at the tests and not take anything lightly. To brush off your test results is completely unthinkable!! I am with Penny, it just makes me so mad to hear this!
All of your symptoms have such a familiar ring. I was diagnosed with Undifferentiated Connective Tissue Disease, not Sclero, in December, and have a positive ANA, positive dsDNA, acid reflux, dry coughing constantly and especially when lying down, heart palpitations, shortness of breath, chest pains, carpal tunnel, among other symptoms. Your rheumatologist actually should be the one searching the web if he thinks that these symptoms mean nothing!! Doesn't he realize that these diseases are especially confusing, which is the reason that he should be looking at the clinical presentations along with the labs to make a diagnosis?
I felt a little bit differently than you, in that I did want to get diagnosed, finally! I had many, many years of symptoms and had all of them brushed off by a previous doctor. Of course, no one wants a bad disease, but what I believe we all want are answers.
My heart goes out for you, please cry on our shoulders anytime. We carry plenty of tissues and will help you dry your tears!
Many, many warm hugs.
Janet

Dear Susie:
You are such a sweetheart! Thank you so very much for your kind words and for the soft hugs; I felt them way over here!
You and Jeannie both have very good points, this doctor should be made aware of the situation in his staff. Of course, because I have a hard time talking to people in person (the confrontation/conflict issue again), it will have to be in a letter. It would be a disservice to others if I did not let him (or someone) know what has been going on.
I agree so much with you both on the treatment of patients and that we should all be treated with kindness and respect by all members of the medical community, not just the doctor. I have been treated rudely on each visit by the primary receptionist, with never a greeting or a smile, and always feel like I am "putting her out" when I arrive. Even on Friday's visit, when I asked to speak to the assistant, she argued with me and I had to explain twice that the assistant had just told the other receptionist that I was welcome to talk to her anytime with any questions.
Susie, I am so sorry about the ill treatment your mother has received in the past, and just recently. Thank goodness she has you!! I hope that you get the resolution that you and your mom deserve! And Jeannie, oh, how sad of what your friend had to endure through her illness.
Kamlesh, it should have been a red flag for me when it took over a month to get in to this doctor for the first visit, after the referral. At that time, the doctor said "Oh you were referred by Dr. XXX? I always try to see her patients right away." I couldn't believe that "right away" was over a month! I like your suggestion to look outside of my own area! There are other cities within one or two hours of me, and I am sure there is a good rheumatologist elsewhere!
I am so grateful for all of the support and advice I've received from all of you!! It gives me great comfort!
Wishing you a good day, and much love to all.
Janet

Dear Jeannie and Janey:
I am so grateful for the advice and the links! Thank you so very much. I never before knew of the Patient Bill of Rights. As a patient, I have always gotten the feeling that I was the person with the least amount of rights to choose or do anything else, for that matter. I am glad to have the knowledge; knowledge is power, right? You both have helped me immensely! I checked out the link to Rheumatologists in my area. Yes, we do have limited resources where I live, and out of the five, two are in the office I where I currently go, and one outside of the office is one that I have already ruled out due to reports from others. However, that does leave two in my area, and I will be asking my internist about them.
Dear Penny:
You absolutely hit it right on the nose!! I did have reservations about talking to my internist. I don't like conflict, and I felt that she might be upset if I brought up these issues. I also had the thought that if she were especially "tight" with these doctors, then who would she side with, them or me? However, if I put the situation in the context of patient overload, it doesn't really say anything negative about them. I really like putting it in this way! I don't have to get the courage up to say this!! I can do it!!
Yes, how often have I felt that doctors have total power over my life and health care. And along the same lines, with this I have always felt that I have no power, no rights, not even to my own files. And, having requested them twice with no responses, it affirmed this belief.
Dear KD and Snowbird:
I really do feel now that to go back to the same office would be the most detrimental. Yes, I think now that I have given them enough chances, and it is up to me to change to a completely different office. I have the tools, information and strength to do it!
To all of you:
Your warmth and advice has helped me so much! I will be putting on my "Janet dressed as Jeannie" disguise when I make my phone call to my internist next week!! :)
Many, many warm hugs and much love!
Janet

Hi Monica:
Welcome!
I have Raynaud's and I've noticed that my hands and feet will turn icy cold, then when they warm up, the bottoms of my feet and the palms of my hands will turn an instant bright or sometimes very deep red. It looks as if I've just put on a pair of very red gloves, ending right at the wrists.
On other occasions, the bottoms of my feet and the palms of my hands, when icy cold, will turn a very white white, then very red after warming up.
Just within the last two months, my nose has joined in, so all three areas are now affected.
I hope this helps you.
There is a lot of support here, please don't worry. We will hold you up!
Many hugs,
Janet

Hi Everyone!
I am an ex-techie myself!
I cannot help you with ISP problems, but I have one word of advice for hard drive failure. If you hear your hard drive failing (clicking), then it goes before you get a backup, remove it and freeze it. Freezing allows the components to contract, then you can reinstall it, and you can have one last shot to grab your data, fast! It doesn't always work, but it is one to way possibly retrieve your data when all else seems lost.
I learned this the hard way! But it does work!
Just thought that I would pass this on, since, like everyone, my whole life is stored on my computer.
Many hugs to everyone,
Janet

Hi Everyone!
My skin has been thickening in my fingers, the undersides. This started at least two months ago. Is this typical for the fingers, or is it the topsides? Also, how long does the thickening last?
This is a great question! I have been curious, also.
Hugs,
Janet

Hi Snowbird:
I've always had my hands and feet work in sync. I can be toasty warm all over, and then suddenly my hands and feet will turn icy cold! Lately, my nose has decided to join in, so now I have 3 areas to try to warm up!
When my nose gets cold, I also notice that my two front teeth feel icy cold, too, and my nose feels very achy. Very strange indeed!
I guess I can be glad that I have two front teeth to get cold, it would be worse if I didn't!
Raynaud's works in mysterious ways. I hope this helps you!
Warm wishes,
Janet

Hi Jill:
For the swallowing, I've been on Prevacid, Prilosec, and now Protonix, trying to see if any of these medications work before I go to a GI. It seems that they work off and on; I will have 3 or 4 weeks with no problems swallowing or dry coughing, then 2 or 3 weeks with lots of problems.
To see if I'm going to have a rough, painful swallow, I now take mini test swallows first, whether it's a liquid or a solid, to see how it is going to go down. It is much less painful when it's a small swallow.
I hope you can find some relief.
Best wishes to you.
Janet

Hi KD and Jeannie:
I am glad you brought up this topic. I am on the generic Plaquenil and Prednisone, both for about 3 months now. I have not noticed any difference in the fatigue, but have had a lot of reduction in joint pain. My hands are still red and swollen, with no difference.
I was under the impression from the P.A. at my rheumatologist's office that the Prednisone was the only drug that was being prescribed for my symptoms, however, in reading the article Jeannie gave, it seems that the Plaquenil also just addresses the symptoms.
Am I reading this correctly? If so, what addresses the disease? How can you ever get the disease under control if you are not taking medications to control it, just the symptoms?
Just curious after reading this post.
Hugs,
Janet

Hi Jaxs:
Well....we care about you! We care about how you are doing! We understand how you are feeling!
You don't have to feel that family doesn't care anymore, because we are family and we care! Family doesn't have to mean blood-related.
Sending you a big huge hug.
Janet

Hi Everyone:
Can we form a virtual chain of hope to encircle Jeannie and her best friend today?
Someone take my left and and someone take my right hand, and we can form a protective circle that reaches all the way around the world.
And if anyone else needs an extra special boost today, please feel free to step inside.
We are here for you!!
Extra special warm and hopeful hugs,
Janet

Regarding brain fog:
You know it's bad when....
You call your daughter (Noelle) by the kitty's name (Topsie), and you call the kitty by your daughter's name, and you finally give up and call them both "Honey."
Janet

Hello again! I am limiting myself to two questions a day, so I promise no more! :blink:
I have more questions involving skin changes over the past two months.
Over the past two months, I have noticed that the skin on the underside of my fingers has gotten extremely rough and dry. My skin seems to have thickened considerably on the undersides of my fingers and has turned a yellow/orange color. One of the first fingers to do this is now turning a brownish color.
My skin has also been splitting on the undersides, which is extremely painful.
Prior to the last two months, my knuckles got extremely rough and dry, with horrible, bleeding cracks all over, pain and redness. I used a handmade hand cream, which helped immensely, although, at this time they are, once again, getting quite bad.
The other skin issue has to do with the sensitivity in my skin all over my body, but especially on my face. My skin is losing its sensitivity. I am not experiencing numbness or tingling, but have noticed that I am unable to feel anything when I scratch my skin. If I dig my nails deeply into my skin, I am able to feel, but otherwise, not.
I also have a very rough, raised, dry spot behind my left ear lobe. This raised area is approximately one inch long and one-quarter inch wide. It is not painful, but sometime itchy and occasionally weepy. I have had this for many years. Unfortunately, I have ignored this for so long, that I forgot to mention it to my rheumatologist and the dermatologist (who did my skin biopsy). I did research on keloids, but it does not seem to fit the descriptions.
I did mention the new skin issues to the P.A. and asked if they were caused by the medications, and she said "no," but nothing else.
Has anyone else experienced issues like mine? Could they be indicative that my disease is changing?
Also new to my skin changes are extremely dry, splitting lips. My lips split when I smile or eat. I do use lip balm at night, but they continue to dry out and split during the day.
I have also noticed a patch of brown skin developing over my left knee. It is approximately the size of a softball, not raised or rough, but with a strange pattern of brown and white. In a way, it looks like a giraffe pattern.
Thank you, once again, for all of your encouragement and support since I have been here.
Warmest wishes,
Janet

Oh, Jeannie, I love what you said your husband does, "the slow blink thing." That just cracks me up!
I was 39 when my general practitioner started blaming my problems on possible early menopause! I knew he was wrong.
I drive my daughter crazy with my problems! I have to watch and re-watch segments of movies, right after they happen! She now takes away the remote. I have to read and re-read parts of books until the words finally soak in! I have really tough problems with new recipes, too, constantly leaving out key ingredients (the lemon in a lemon meringue pie or the yeast in a yeast bread), going back over and over looking at the recipe, thinking, "was that Tablespoon or Teaspoon," looking again, then going back to my cooking and thinking, "Now what was that again, Tablespoon or Teaspoon." The spelling thing really gets to me, starting each word with the second letter, then having to backtrack to insert the first letter. I try to talk as little as possible, because sometimes the confused looks on people's faces say to me, "Wow, is she drunk?" Hahaha! I don't even drink!
I used to be VERY worried about all of these things, but have since calmed down as they seem to be very "normal" with these diseases!
((Many, many hugs!!))
Janet